Update: Autism, ‘Essential Benefits,’ and the New Federal Health Care Law

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.

The IOM recommends that HHS use the following process to establish the initial essential health benefits package:

1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health

2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford

3. Weigh possible trade-offs through public discussion of benefit costs

4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient

The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.

48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)

31.1% of children with autism have an unmet need for a specific health care service (14.8%)

38.6% of families who have a child with autism have financial problems (16.7%)

57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.

“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”

Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.

As a small business owner who every year has to review and choose a plan, it is bothersome that the IOM would recommend as a baseline a typical small business plan. Most of those plans have very high deductibles, copays and poor coverage. And every year I see those plans get worse and worse while the costs go up and up. As with most policy changes, the devil will be in the details, but I’m not holding my breath.

Will any of this apply to plans like AllKids (which is through the state)? I have serious doubts about that, which is sad, considering I know my son is not the only child covered my this program. With a disabled husband, I still had to give up working to care for my son.

My son is over the age limit for kids insurance in Texas I had to put him on my insurance which has drained me of money He hasn’t been able to find a job that will accept him.
So there are many reasons that we need help to support our son and many other children in this nation.